Following the recent report of a link between CFS
and the XMRV, NJCFSA Trustee Emeritus Mary Ellen McNamara initiated a series of
emails with the National Institute of Allergy and Infectious Diseases (NIAID).
They are reproduced here with permission.

Discovery of the retrovirus, XMRV, in 67% of ME/CFS patients was reported six
months ago (Science, October 23, 2009) Based on your HIV expertise and
responsibility for NIAID’s research program, would you kindly answer the
following questions about the discovery before the May 10, 2010 HHS Chronic
Fatigue Syndrome Advisory Committee meeting. On behalf of the ME/CFS patient
community, the questions and your responses will be posted online.

What is your current position on ME/CFS? In
“AIDS or Chronic Fatigue? Linking a New Mystery Illness to an Old One,”
(Newsweek, 9/7/92) you predicted unusual viruses isolated in ME/CFS would
turn out, on close inspection, to be innocent bystanders. Do you still
maintain this belief in light of the XMRV discovery?

In response to the XMRV discovery, what
groundbreaking retrovirus science and technology from the past 30 years will
NIAID apply to the study of ME/CFS pathogenesis and clinical management, and
who on your staff will spearhead this?

How much NIAID funding and manpower will be
allocated to ME/CFS to study the role of infectious agents-- bystander or
not—and the cause of immune system activation/damage in this severely
disabling disease? What ME/CFS clinical trials will NIAID initiate?

You have made valuable contributions to HIV science
and medicine saving millions of lives worldwide. At NIAID you can help the
casualties of another infectious/immune system illness, ME/CFS. I hope you and
your staff will respond to their needs as well.

I am responding on behalf of Dr. Anthony S. Fauci,
Director of the National Institute of Allergy and Infectious Diseases (NIAID),
to your April 16, 2010 letter regarding the possible role of xenotropic murine
leukemia virus-related virus (XMRV) in Chronic Fatigue Syndrome (CFS). I am a
Program Officer in NIAID’s Virology Branch within the Division of Microbiology
and Infectious Diseases with responsibility for research on non-HIV
retroviruses, and am pleased to respond to your letter.

The potential retroviral link between XMRV and CFS
is an interesting, albeit unconfirmed, association. To date, there are no data
to suggest causality. Nonetheless, there has been significant interest on the
part of the research community to investigate this issue further. To that end,
NIH has seen an influx in the number of XMRV-related research applications
submitted in response to the ongoing NIH Program Announcement for CFS (see:
http://grants.nih.gov/grants/guide/pa-files/PA-08-246.html), as well as through
NIH investigator-initiated channels. In my own program, I have seen considerable
interest and energy among investigators who are committed to further
investigating this issue.

The National Cancer Institute, another component of
the NIH, is leading the NIH XMRV research effort and has created a website
devoted to this topic (http://www.cancer.gov/newscenter/pressreleases/XMRV_QandA).
I encourage you to contact NCI's Cancer Information Service at 1-800-4-CANCER
(1-800-422-6237) to secure additional information about their XMRV research
activities. In addition, you may want to contact Dr. Eleanor Hanna in the NIH
Office of Research on Women’s Health, who coordinates the Trans-NIH Working
Group on CFS (http://orwh.od.nih.gov/cfs.html) to ensure that a
multidisciplinary and integrated approach encompassing the missions of many NIH
ICs is brought to bear on CFS. Dr. Hanna also coordinates the Trans-NIH Program
Announcement I referred to earlier, and may have additional information about
NIH’s CFS research effort. Dr. Hanna’s contact information is 301-435-1573 and
hannae@nih.gov.

As you may be aware, all grant applications must
undergo review through the NIH peer review process, which is designed to
evaluate and rate the scientific and technical merit of research applications.
Funding decisions are based on the outcome of this process. Peer review of
applications submitted to the NIH takes place in multiple steps. The initial
step of the peer review process takes place in Scientific Review Groups. The
second level of peer review is carried out by the NIH National Advisory
Councils, which are composed of scientists from the extramural research
community and public representatives. More detailed information on the NIH peer
review process can be found at
http://grants1.nih.gov/grants/peer/peer/htm.

We appreciate your interest and support in NIH’s
research programs. I hope that this information is helpful to you.

Thank you for your timely response to my April 16th
letter to Dr. Fauci.

I am very pleased to learn that investigators in the
Virology Branch are committed to studying the reported link between XMRV and
CFS; NIH has received an influx of XMRV-related grant requests; and most
importantly, investigators in your program are enthusiastic about their
investigations. I also appreciate the NIH links and contact information you
provided.

The patient community is following XMRV developments
with great interest as the science unfolds. In response to the XMRV discovery,
the New Jersey CFS Association (www.njcfsa.org) has invited Dr. Judy Mikovits,
Director, Whittemore Peterson Institute and our longtime Medical Advisor, Dr.
James Oleske, to speak at our annual patient and physician conference
co-sponsored by Monmouth Medical Center. We would like to extend an invitation
to both you and Dr. Fauci to attend the conference to be held on October 17,
2010 in Eatontown, NJ and will send additional information in the coming months
as it becomes available.

Thank you again for your response and for providing
very helpful and encouraging information about your work.